Prophylactic treatment is recommended for severe haemophilia. Non-adherence to a prophylactic regimen can limit treatment effectiveness and compromise outcomes. The aim of this study is to validate a new prophylactic treatment adherence scale entitled Validated Hemophilia Regimen Treatment Adherence Scale--Prophylaxis (VERITAS-Pro), a self-/parent-report questionnaire consisting of 24 questions on six (four-item) subscales (Time, Dose, Plan, Remember, Skip, Communicate) that takes approximately 10 min to complete and is currently available in English only. Participants were recruited to complete the VERITAS-Pro for validation and reliability analysis; and observers were recruited for inter-rater reliability analysis. Validation measures included subjective adherence ratings from participants and providers and the total number of recommended infusions administered as obtained from infusion logs. Data were evaluated for the entire sample and for parent-report and self-report subsamples. The study sample included 67 males, 53 (79.1%) diagnosed with severe FVIII deficiency. Internal consistency for the total VERITAS-Pro score and all subscales was good to excellent; test-retest reliability correlations were very strong. Validation measures were strongly correlated with VERITAS-Pro scores. The VERITAS-Pro is a reliable and valid measure of adherence to prophylactic treatment of haemophilia. The VERITAS-Pro has greater utility than a global or informal rating of adherence because it represents a quantified and validated measure of adherence from the patient's perspective and it divides adherence into specific areas, allowing insight into particular issues underlying non-adherence. This tool may increase sensitivity to adherence problems and allow more targeted interventions to enhance adherence.
Preservice teachers face formidable tasks of planning and management as they enter the classroom for the first time as professionals. They also bring with them mental imprints of what teaching and leaming are like, images gained not from their professional preparation programs, but from their years as students. Once in the role of teacher, those views may be reinforced by the circumstances of their apprenticeship. This qualitative study reports five themes in the preservice teaching experience of 10 preservice teachers which may reinforce traditional views of schooling and discourage understanding and addressing unique learning needs of academically diverse learners such as gifted, remedial, and special education learners.
Episodic treatment of bleeding disorders is defined as utilization of clotting factor concentrates in response to acute bleeding episodes to achieve haemostasis. Non-adherence to prescribed episodic regimens can limit treatment effectiveness and result in target joint formation, pain and disability. Evaluation of and interventions to promote adherence may improve health outcomes. The purpose of this study was to validate a new adherence scale developed for individuals with bleeding disorders treated on episodic infusion regimens, entitled VERITAS-PRN [Validated Hemophilia Regimen Treatment Adherence Scale - PRN]. Participants were recruited from the Indiana Hemophilia and Thrombosis Center patient population. Participants completed the scale for psychometric development and analysis. Subjective ratings of adherence from participants and providers were used for validation. The study sample included 51 male and three female patients. Twenty-seven participants (50.0%) were diagnosed with FVIII deficiency, 21 (38.9%) with FIX deficiency and six (11.1%) with von Willebrand's disease (VWD). Internal consistency reliability for the total VERITAS-PRN score and the majority of subscales was good-to-excellent, with the one exception being the 'Plan' subscale. Test-retest reliability correlations were good-to-excellent for the total scale and all subscales. The VERITAS-PRN total scale had moderate-to-strong and statistically significant correlations with validity measures. The VERITAS-PRN is a reliable and valid measure of adherence to episodic treatment regimens for bleeding disorders. This tool may be utilized as a standard measure of adherence to increase sensitivity to adherence problems and promote targeted interventions to enhance adherence and health outcomes.
IntroductionEpidemiological surveillance of haemophilia through linkage of medical records within a US state has not been conducted in 20 years.AimThe Indiana Haemophilia Surveillance Project aims to identify all persons with haemophilia who resided in Indiana in 2011‐2013 and to determine the percentage of patients in Indiana cared for at a federally recognized haemophilia treatment centre (HTC).MethodsA retrospective review of medical charts was conducted to identify haemophilia cases during the surveillance years. Case‐finding methods involved a variety of medical care resources including hospitals, administrative claims data and haematology/oncology clinic reports.ResultsIn Indiana, 704 unique haemophilia cases were identified. Of those cases, 456 (64.8%) had factor VIII and 248 (35.2%) had factor IX deficiency. Among those with known severity levels (n = 685), 233 (34%) were severe, 185 (27%) were moderate, and 267 (39%) were mild. Overall, 81.7% of the haemophilia patients identified visited an HTC at least once during the three‐year study period, which was the requirement for being considered an HTC patient. Age‐adjusted prevalence for 2013 was 19.4 haemophilia cases per 100 000 males, 12.7 per 100 000 for factor VIII and 6.7 per 100 000 for factor IX. Incidence of haemophilia over the 10 years prior to the surveillance years was 1:3688 live male births in Indiana. During the surveillance years, 24 cases (3.4%) died.ConclusionWe observed higher incidence and prevalence of haemophilia in Indiana compared to previous national estimates, as well as higher HTC utilization among persons with haemophilia.
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